Bluebumedfly are you around? desensitisation question

[Weta]

BBF am hoping you may read this... when your SDD was desensitised, at what point did you stop carrying epipens etc, or does she still have them?

I was on the phone to our specialist today and she casually mentioned that DS1 probably doesn't need the epipen any more as he'd need to deliberately eat several yoghurts to have a really bad reaction. I just about fell off my chair!!

We don't have to decide yet as the epipens we have are good for the rest of the year, but am trying to get my head round it all...

Hi weta, I'm here :)

It's a tough one for sure, it was such a hard decision as you always worry for sure. We still have some at home even though we know she has had 20+ nuts safely and hates the taste!

I'd keep getting the prescription for a while yet as its fairly early days and i suspect when they grow and puberty hits things can change and you can be too safe and nobody gets hurt :) I am of the state of mind that if you have them, nothing will happen, a bit like carrying an umbrella to ward off the rain :)

No pens now at school which is freaky, I always have piraton in my bag because of DD3, also with the summer coming and the pollen approaching (if we ever have a summer) then allergen loading is a possibility.

It's a very personal choice, to be done only when you are 150% sure the programme has been totally effective (which I'm sure it has) but don't let anyone rush you, it's been a way of life for so long after all.

Whilst I will happily now go out without pens, I always know where the piraton is and we are on year 3 of the programme.

My advice would be take every day as it comes, don't let anyone rush you into a decision until you ate clinically proved otherwise and secretly stash them in your handbag for your own sanity for a while if needs be.

Many congrats to you and your family for being brave enough to get to this point, it truly is life changing eh? :)

Thanks so much, it's great to be able to talk to someone who's been through it!

Your advice sounds very good - I'm definitely not mentally ready to make that change just yet, though I guess I probably will need to at some stage and of course that would be a good thing as it'd mean we felt positive about everything working. I want to keep the epipens until he's 'finished' the programme (ie the increasing doses) at the very least, as at the moment we are still continuing to challenge his body.

I was thinking too that the antihistamine will no doubt be a permanent friend as I guess even if there's no longer a risk of anaphylaxis at some point, there will always be a risk of milder reactions.

Doesn't feel life-changing quite yet as we still have to be very careful about not having more milk than what the protocol says, so he still has a restricted diet etc, but I can see it could well feel life-changing in the not too distant future if all goes well.

Thanks again for your support!

Anytime, sharing is vital. I'm not that regular on MN anymore so if you want to chat please don't hesitate to message me then I will know to log on. I am not sure if I can DM but I will try to send you my email address now.

Waiting until the protocol is complete is an extremely good plan in my mind, it will all become apparent in time.